I mean it’s great in the sense of I’ve got friends who live in America and contacts and so forth and it’s amazing, you know, I get to see their life. I’ve got family, you know, who I’m a estranged from that I have been able to reconnect to. You know, a couple of years ago, I found a cousin by chance, you know, recognise the name. I dropped, you know, a message on Facebook, you know, “Are you related to x, y and z? and she was like, ‘Yes, I am, who are you?’

I really enjoy social media and seeing there are other autistic people which is just like amazing because it just makes me feel like I’m not alone, you know.]

I: Could you tell me a little bit about that community, I’m very interested in hearing about how this community on social media has evolved and, you know, how it really helps you?

Yeah it’s just you go on there and you just realise there’s so many different kinds of people and, you know, we’re just like neurotypical people we’ve all got different personalities but I think they understand your struggles more than neurotypical people like my mum just did with me, you wouldn’t be able to, you know, sorry I’m trying to like put it into…

I: Okay, so you talked about Facebook and social media, how, how do you think it fits in in the equation of loneliness really [um] you talked about how you get in contact with that, other carers, could you talk, talk to me about that a little bit?

Yeah I think it’s, it’s a brilliant help, you know, and I see, I see them all rally round and support any carer that’s of similar to the way I describe how I feel when I feel there’s nobody to talk to and they actually say this stuff online and we hopefully create a sort of safe space for them to feel that it’s alright to say these things, you know, there’s some limitations, you know, because other people get upset if you start swearing and things like that

I: Yeah

But within reason they know that they’re free to say things that another person who’s never done caring would not understand. So, then all these other carers come round and they say it’s alright we’ve experienced the same you’ll be alright, you know, and they send these little virtual hugs and things

I: Yeah

And it really works well for them, it really works well

I: Yeah

And I think it’s, it is you know, people run social media down but they don’t really talk about the positives that come out of it.

Because the HIV charities are all either waning out, running out of funding, just aren’t there anymore, We, yeah, the group that is on Facebook, that particular group has kind of taken its place as that support network. Yeah it doesn’t have all the whistles and bells that the full charities did/ You know the help with funding and you know the help with benefit enquiries, things like that, but the peer support. I can have a bad day, I can put a post on the group and within half an hour there’ll be three or four people there supporting and, “Areyou okay?” you know “What, what, how can we deal with this?” Different ideas. Just general support.

I think social media is one of the fast track ways to make you feel more lonely than anything else at the moment. Because it’s just, it’s just, it’s like, it isolates you in the sense that you just stare at a phone, or a tablet, or a screen. You’re not interacting with people in the same way as if you’re sat in a room with them, there’s no warmth to it, it’s very cold and clinical. And it’s spiteful and it can be very nasty, and damaging to your self-worth and your self-belief and I’m one of those people who believes that children should be off social media till they’re 16, they shouldn’t have access to it because it does so much damage. But we live in an age where you cannot get away from it and you cannot protect them from that. But half, I think, people’s self-worth and self-image would be so much better if social media wasn’t as in your face as it is nowadays. But I think it contributes to loneliness, I think it isolates people. I think people feel more alone because even though there’s so many people out there, all talking to each other, none of it’s real. You don’t, you can’t trust it. You don’t know if the person talking to you is being real with you. So it’s, it’s just, it just, it’s lonely in itself, it’s a lonely existence social media.

Yes because people are becoming more closed off if you think about it. Like look at how much people integrate with their mobile phones and even me and my partner you know if we’re sitting having a coffee in Costa both of us will have our phones whether it’s on social media or just browsing the web, so I think there is an increasing amount of loneliness happening not necessarily on purpose just in general, the way we interact is becoming more of isolation.

Why do you think we do that? why don’t we interact with each other and interact with our phone? It’s a very hard question.

It’s a hard question, part of me would say in some ways the ease, anonymity of interacting online. It’s probably easier to interact with a bunch of strangers online than it is in person for example.

Is that the case for you?

Yes, because when I came online and that and I speak to people on the group you know because they may see a picture of us but they don’t know who I am personally, it’s easier that way.

I: So we live in a society where loneliness is, almost an epidemic. Why do you think other people might be feeling lonely?

I think a lot of it is down to social media. We paint pictures of ourselves and our lives on Facebook, Instagram, Snap Chat, whatever platform, we paint pictures of perfect lives, and we sit there and we look at these images of all the perfect things that everyone else has, and then you look at your own life that isn’t perfect and you then think yourself worse because your life isn’t as perfect as that. And even though we all know that social media isn’t real life, although I have had people tell me that, you know, that it is life and you delete me on Facebook, you delete me in life, that’s a whole different comedy set sketch. We all know it’s not real life, and people only put on the bits that they want to share, but we still see all those bits that other people are sharing, and we judge our own lives towards that. And if we’re not out partying and socialising all the time, because we’ve got kids, or you know we haven’t got the spare funds to be able to do it, or you know, but then we see everyone else doing it and it makes us feel less than they are.

I think there are positives and benefit… Uh and negatives. The negatives being that these social media websites usually a place where people put only their best parts of their life and, and all the great things that happen to them, so if you’re really lonely and, and feeling kind of low and you’re on that, uh, on these kind of websites, and you’re prone to somebody who’s this kind of thinking of compare and contrast type of thing then you’re going to be looking at these things and all these people living this great, wonderful lives and having all these friends and like living a life that you feel that you can’t, then it’s going to make you really depressed um and angry that you can’t be one of those people that gets to experience these things, and I know that’s, because that’s been my experience, that I’ve like felt so, so jealous and wanting to experience the life that they lead that where it’s filled with friends and acquaintances and um the going out and having interesting life experiences. I think the positives are that it still enables us to connect with other people, despite things going on in our life. I know that I used it to talk to people when um like my agoraphobia was worse, my anxiety was worse, and I found it difficult to leave the house, like at least I would still be able to talk to people and, you know, be in these kind of group chats where I could speak to a bunch of, of different people and it, it can put in touch with people like you as well that it’s more difficult to meet outside. So I’ve, I’ve joined groups like for people with my diagnosis, so like a Borderline Personality group, um and other groups like that, that can network you with other people that feel a similar way, and I think that’s really important for curbing loneliness as well, I think it, it made me feel a little bit better when I could like post something in that group about how I was feeling and other people could be like “hey, I feel the same” and you know, offer to chat or whatever. So I think it’s, it can be helpful.

I: So these are uh groups on Facebook or am I old school? I don’t know.

Yeah, Facebook.

I: Facebook. So, so tell me about those groups and how uh they buffer against loneliness?

I suppose I’m talking about loneliness in, in my sense where like I, I have mental health problems and there aren’t people in real life around me that also suffer from those problems, so I feel I’m more alone because I can’t talk about the way that I feel and like really relate to people that have similar problems to me. So when I can go on these groups and like… I just remember feeling this sense of joy, I was like oh my god, I’m, I’m not alone, there’s this person that feels exactly the same to me and they, they like really understand and they can be quite like unhelpful places as well I think because if you put a load of like people that have a certain mental health problem in a group together inevitably there’s going to be some problems, like cos the admins and moderators of these groups tend to have the same problems themselves, you know, they’re not going to be completely unbiased, so there were a lot of problems in them where people would just be nasty to one another and the, the moderators would have a difficult time like kind of trying to calm these arguments. But I think um overall it tends to have quite a positive effect because you can, you can talk to people that have the same kind of problems and just they make you feel less alone.

Well so I would divide social media with this on the one hand it’s really helpful because I can, I can call my mum I can call my nanny with video call, you know, I can do it with you right now. So on one hand this is very useful, very helpful kind of important that we can still stay in touch even though that we are like 2000 kilometres apart. But on the other hand you know, loads of people are, are just like create a happiness around themselves but is not really true. We are, and also we are like comparing ourselves much right now to the other people like oh my God she is so skinny she looks so nice.